autismmumsdads

Archive for the ‘PDDNOS’ Category

Hello Everyone.

I would just like to thank you all for supporting the guest bloggers whilst i was away. I will be resuming my written blogs some time this week so thank you for your patience.

In the meantime i have opened a new page on Facebook to coincide with World Autism Awareness Day – here is the link http://www.facebook.com/AutismMumsandDads¬†PLEASE ‘Like’ my page and help to raise more, much needed Awareness.

Feel free to share what you have done for World Autism Awareness Day below ūüôā

L x

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I really wanted to share with you all the fact that yesterday I was informed that my 3 and a half year old Autistic Son, who is non-verbal will be discharged from the Speech & Language Therapy Department, after NO therapy.

The reasons why haven’t been disclosed but i will be demanding answers as to why his speech therapist – and I use that term loosely, deems his speech and language satisfactory enough to not be pursuing any type of speech therapy.

Since A was diagnosed last July, we where told he had been put on the waiting list for Speech Therapy & due to his diagnosis he was a ‘priority case’ & we would hear back from them soon, this was the same time I was promised visual symbols to be sent through the post – needless to say I’m still waiting – wow their printer must be slow!

My son has a speech disorder due to his autism & early intervention is absolutely crucial to his future development. He is way behind in his speech and language when compared to his peers & this can only add to his already present communication impairments.

I have a strange feeling, I’ll be told its down to lack of funding in our area – its disgraceful, and its not just happening to me. It seems ‘professionals’ don’t care unless its happening to them – and why would they? They aren’t the ones with a 3 year old son who is going to mainstream school in September with one spontaneous word in his vocabulary – and they bang on about giving our children the best start.

I have been lied to over and over again, why do we have to fight for everything for our children? Don’t we put up with enough already?

Many children with an ASD are delayed in their use of language and shy away from using speech. Therefore other methods of communication need to be established before speech and language will follow – is it too much to ask for some help or guidance as to what these methods are?

Why does nobody care?

Why is there a lack of funding for crucial interventions to be present for those children that need it to live their lives the best way possible?

I’m not the only one who is angry, upset and feeling let down. I have lots of friends – fellow Autism parents who are being let down with therapies or having to wait years for a diagnosis whilst their children are being labelled as ‘naughty’ its about time people stood up and became more aware and its about time people started caring for the lives of our children – they would if it was theirs!

Sorry for the rant but I had to get it out of my system, I and many others fight endlessly for our children and support is so important.

I’d also like to mention that I’ve had some wonderful support from friends on twitter who have given me some great advice – where would we be without people like this?

Any comments please feel free to leave them below.

L x

In yesterdays post I wrote about limited interests and the effect it can have on both parent & child.
A, really struggles with the concept of sharing and taking turns, what’s his is his & what’s mine is his also.

One of the main impairments of Autism social interaction – which will always be with A but it can improve. A doesn’t play with other children properly, he will approach them spontaneously but usually ‘hugs’ them for sensory integration or acts inappropriately or to others ‘oddly’ If they approach them he either doesn’t notice or pushes them when they get to close to him – he can’t socialise appropriately as he doesn’t know how to & such situations can cause him to have a sensory overload.

We have tried many times to aid his social interaction by teaching him to share & take turns, needless to say we’ve had very little success. He gets frustrated, often aggressive & at times very upset – that’s why he prefers to play alone, its on his terms, its uncomplicated & less overwhelming.

Every ASD person share problems related to social skills, some more severe than others;

Conversational skills (Greeting somebody, joining a conversation, verbal turn-taking, listening skills, talking about a particular topic, awareness of personal space, ending a conversation.)

Play skills (observational skills, joining play, turn-taking, sharing, compromising, coping with ‘no’, coping with losing, reciprocal play, ending play.)

Understanding emotions (reading facial expressions, reading body language, voice quality – intonation, pitch, speed, awareness of own body language, having a large emotional vocabulary, anger management and self-regulation skills)

Friendship skills (Just like many of the above but also things like knowing what a friend is, and being able to choose appropriate friends, recognise true friends from false friends, develop the ability to share a friend, deal with peer pressure.)

All of the above are vital skills when developing relationships, most of them come natural to you and me but to a person with Autism they take longer to develop as they have to be taught & it can be very isolating for them.

So I thought I would share with you another method I was taught at Early Bird, People Games.

A people game is an interaction routine which involves adult & child taking turns, communicating and enjoying themselves.

The game should be SHORT. (A song or tickling)

Get your childs ATTENTION – try to look & sound interesting, be on their level.

Play the game REGULARLY, always in the same way so rules are easily learnt.

ENCOURAGEMENT to join in, begin taking turns – this could take a while to grasp but stick with it. (Stop if your child is getting to distressed)

HELP them to understand when its their turn by slowing down waiting, and exaggerating your voice or actions at that part of the routine.

TRY making up your own song that relates to the child, replacing a word in a nursery rhyme with their name for example.

Choice of people game will depend on your childs awareness of other people, his/her interests and where they are development wise.

IDEAS FOR GAMES

For a child who has a short attention span who is reluctant to sit still…

Rough & tumble
Running up and down the room

For a child who can respond non-verbally…

A song with actions

For a child with some words…

Again a song, but stop and wait for them to fill in the missing word, don’t wait to long but give them a chance to respond.

A child with more language

Songs – Old MacDonald, Wheels on the bus – Songs that give your child opportunity to join in or use their own words on request, example: the animal or the horn. Give your child enough time to process and wait for them to join in on request – if they don’t respond after you’ve joined in – just carry on & try again

Games should be

Short
Fun
Repetitive
Small steps
Turn taking opportunities
Motivating

The aim is to encourage social interaction & communication & taking turns but its important not to expect too much to soon, it could take a while before your child grasps the idea.

Any other suggestions for games or any comments please share as always.

L x

I’ve¬†spoken about limited interests before and how much of an effect¬†it can have on your child and yourself, trying to keep up with a child who can’t¬†be occupied, is climbing furniture, running up and down the room, rocking back and forth, hand flapping….A child that just doesn’t¬†respond to you, doesn’t look when their name is called – it can be frustrating, exhausting and emotionally draining.

I used to spend each day wondering why A didn’t¬†want to play with toys, didn’t¬†want to play a game with me, didn’t¬†want to even look at me or have me anywhere near him at times – some days I’d¬†think he hated me, other days id wonder what i¬†was doing wrong or I’d¬†be so tired from chasing him around the house, moving things he wasnt allowed to touch and lifting him down from the furniture that I¬†didn’t have time to think.

When I¬†went on the National Autistic Society Early Birds Course – this was the first time I¬†realised I¬†wasnt alone. I was opening up about how hard I¬†was finding coping with A’s wandering & constant need for distraction and occupying, for once I¬†didn’t feel like a failure.

I learnt that children with Autistic Spectrum Disorders tend to prefer toys such as shape and colour matching, jigsaw puzzles and construction¬†materials. It’s also¬†a good thing to encourage physical activity, because it doesn’t¬†involve any need for imagination or understanding of language, its free-play, usually your child is in control and so its more enjoyable. It’s also been proven to help reduce problem behaviours through distraction and focus on an activity, also improving some key skills such as co-ordination.

Here is a list of toys and games that have proved popular with ASD Children

  • Bubbles – These can also help with the early stages of speech through making sounds: ‘Pop’ < “Can you pop the bubbles?” – Fun and learning at the same time.
  • Torches/Disco Balls¬†– A, is fascinated by lights, he gets really excited and is a great way of calming stressful situations.
  • Shape Sorters – A short but focused activity, also helps hand-eye co-ordination.
  • Jigsaws
  • Duplo, Lego.
  • Marble runs¬†– can be stimulating to watch
  • Trains
  • Drawing, colouring, paints, crafts.
  • Dvds¬†– great for distraction if you have a portable dvd and for occupying should you want a 5 minute break ūüôā

Books are also a great hit with lots of children –

  • Board books are great to buy as less likely to be damaged.
  • Books with flaps keep a child’s attention and build anticipation.
  • Books made of fabric and different textures can be great for sensory needs.

Toys for outdoors and physical activity

  • Trampoline – in my case great instead of buying a new sofa, also great to burn off excess energy and FUN!
  • Slide – Great for your little climbers, if they can’t climb the furniture, give them an alternative – we used to have a great big slide in our living room!
  • Swing – Great for children who like to rock.
  • Sandpit or water table – again great for sensory play

Computers and Computer games are fascinating to children with Autism and can be a great way of getting them focused on something.

Its important to set rules/boundaries from the beginning though.

  • ipad’s –¬†Although expensive they facilitate communication and aid in learning. The iPad, like other computers, is an effective tool for many on the autism spectrum. Its flexibility and portability offer some additional advantages, over laptops or PCs. The touch screen and layout make the iPad more accessible for children with coordination or learning difficulties; these children may find sliding and tapping easier than either typing or writing. Moreover, the iPad can be easily carried, and thus is helpful for calming and focusing children who are on the go – would really help in stressful situations as a distraction tool such as going out to places.
  • Nintendo DS.

Software recommended for those with Autistic Spectrum Disorders are as follows

  • Character software
  • Factual software such as Microsoft’s Magic School Bus or the online encyclopedia Encarta
  • Software to develop vocabulary such as the Talking animated alphabet¬†(Sherston: www.sherston.com)
  • Software for young children such as Make it happen: jump ahead toddler (Knowledge Adventure)

I hope some of these suggestions can be helpful to others – tomorrow I’ll be blogging about people games to aid interaction and communication as well as sharing and taking turns.

If anyone has any other toy or software suggestions that their child has really enjoyed please share by commenting below.

L x

For todays blog post, i wanted to share with you a small video that was presented to me at my first session of the Early Birds course РRun by the National Autistic Society to help those who had a recently diagnosed pre-school child.

Its informative and for me, was very emotional to watch.

Made using real life drawings from people¬†with Autism, and using narration from those that are able to express their memories and feelings, this short film was produced as part of Channel 4’s¬†Autism Awareness¬†campaign back¬†in 1992 – so it is an old bit of footage but definitely worth the watch if you are touched by Autism or would like to gain more understanding.

It is 11 minutes long but i ask kindly that you do take the time to watch it & continue in helping to raise Awareness of Autistic Spectrum Disorders.

http://www.youtube.com/watch?v=cPR2H4Zd8bI

Thank you.

As always please comment – if you want to.

L x

One thing that I really struggle to cope with when it comes to A’s Autism is the unpredictability of it all.
We all wish we had a crystal ball so that we could see the future & be more prepared for what life throws at us.

I fully accept A’s Autism although its challenging & hard work at times its very rewarding to see him develop and achieve things we once thought would never happen & this can only continue as he gets older, but at what pace, we don’t know?!

A, is only very young yet, he will be 4 in June and this is a massive year for him – he starts school in September and that is a real worry for me. A, as you know from previous blog posts, isn’t statemented and will attend Mainstream.

I wish I knew what the future held for him at school and whether he will make friends and be happy. A, at the moment is non-verbal and doesn’t socialise with other children the way his peers do, so I worry this may prevent him from developing relationships and being included into school life. I am pretty confident he will gain full time support via a one to one, but will this be enough?

The uncertainty of the future is something that drives me crazy with worry, that sometimes I try my hardest not to think about it and think to myself “well we’ll cross that bridge when we come to it”

I wonder when A, will speak, will I and others be able to understand him? Will there come a point when A, has violent meltdowns and doesn’t sleep? Will he begin to communicate with us in a way that me and you would? Will he drive a car? Will he have children? Will he get a job and have a nice house?

I hate these questions, because even though we never know for certain these sorts of questions aren’t the ones that parents of neuro-typical children worry about – yes it crosses their minds but their children are capable of all of these things, is A?

And then what will happen when he is older and I’m not around anymore? Will he be ok by himself? Will he be able to live independently? I wish I could live forever not because I think A won’t achieve these things but so then if he doesn’t I’ll be around for him, to care for him, to make sure he always has me in his life.

Some days I find myself trying so hard to not think about the future, because the uncertainty of it upsets me, its worries me. I don’t want much from life, I just want to know what to expect, what to plan for.

I wish that the world was more Autism Aware so that some of my worries wouldn’t need to exist, such as A, going to school. But because people aren’t aware, they just assume the worst in people, or laugh at them, makes jokes and JUDGE. Some people seem as though they don’t want to be aware because that would mean harder work for them where its best to ignore.
And some people don’t choose to be aware, not necessarily because they are ignorant but because its not affecting them, so why would they care?

So I’m asking each and everyone of you to please share my blog and share anyone else’s blogs or websites to help spread the awareness and make lives much more happier for millions of people who face these uncertainties.

Its estimated that 1 in 100 people in the UK have Autism, they all have family, a Mum, a Dad, siblings. – when you add those all up that’s a lot of people affected by Autism – and that’s not counting the millions worldwide.

Make a difference & become more Autism Aware.

L x

We all love our sleep, we rely on it to have enough energy to face our day ‘recharge our batteries’ …

The amount of sleep we all need varies from person to person.

When I was younger I always had some sort of anxiety about being asleep, I would always over think the situation. When I was 5 years old my Mum left home and I think that’s where my anxieties began, I would wake several times through the night to check that my Dad hadn’t left, for years I wouldn’t sleep alone and I did sleep-walk on numerous occassions.

Luckily as I’ve grown into adulthood, I don’t sleep walk anymore & my anxieties have more or less gone.

Some children with an Autistic Spectrum Disorder have unusual sleep patterns, with some appearing to need very little sleep and some refusing to sleep alone.

I am lucky, A has always been a very good sleeper.
But we did have problems at one stage getting him to sleep.
I can’t remember how it started but when he was around 9 months old I would cradle him in my arms until he went to sleep…sometimes it would take a few minutes, others it would take an hour or even longer. It was very frustrating and I’d feel so angry that he wouldn’t go to sleep. I’d be thinking, I’ve looked after you all day, I’ve played with you, fed you, changed you, you’ve been awake for hours, why won’t you go to sleep? Sometimes I’d cry – out of frustration.
– This continued until he was about 2 years old, picture that – cradling a 2 year old to sleep…it wasn’t fun and it wasn’t easy!
Then we put him into his own room & to our surprise after ‘chatting’ to himself for about half an hour each night he fell asleep – by himself.

Then came the phase of him waking up everyday between 3.30am & 4.30am and when he wasn’t waking early he was awake for sometimes hours through the night – this was around the time he began displaying Autistic Traits, I would be up from this time everyday and then having to occupy him from that time until bedtime & he didn’t even nap some days. It was exhausting, he wasn’t interested in anything, he would be climbing all day, not eating his meals, flitting from one end of the room to other, stimming & his behaviour was challenging. – luckily he grew out of waking up at this time, but we always had to have music playing in his room.

The underlying cause of sleep related behaviours may be sensory sensitivities such as fear of the dark or over-sensitivity to external noises or just due to a lack of understanding of the bedtime routine.
Resistance to change may mean that your child is reluctant to move from a cot to a bed, or from sleeping near parents to sleeping alone.

You may need to teach sleep skills, such as making sure they are aware its bedtime at a certain time – maybe using visual support.

Modifying the childs room so that s/he can be safely left to play in it should they be awake during the night, won’t stop your child waking up but may help the rest of the family to sleep undisturbed.

If your child responds well to routines, you may try establishing a bedtime routine, through using visual structure that minimises stimulation & helps settling them to sleep.

FEAR of the dark may be helped by a nightlight or a torch

EXTERNAL sounds may be masked by quietly playing some favourite music

THICK curtains or black-out blind can help keep the room darker (I used to dread when the clocks changed which would mean lighter nights)

SOME children can be soothed by being swaddled in heavy sheets and blankets, rather than lighter duvets. Alternatively, children who are over-sensitive to heat may need their bedroom radiator turned off and only a light sheet – even in winter.

IF your child insists on you sleeping next to him or her, gradual change can help, by first sitting on the bed, then a chair nearby, eventually sitting in the doorway or just being upstairs until they fall asleep.

Most sleeping issues relate to children who sleep too little. Sleep deprivation for parents and sometimes siblings is physically and emotionally exhausting. In some severe cases, it may be necessary to seek medical advice and medication considered.

I asked a couple of parents I know who have experienced sleeping problems different to my experience to help you understand just how hard it is.

Parent of a son (7) and daughter (12) both on the Spectrum.

“My daughter who is 12 years old has only just started sleeping through the night within this past year. She would on average wake up 4-5 times per week and need to come downstairs with me. Most nights she would remain awake for the rest of the night-even if she had woken up at 1am.
My son, who is 7 has never really been a great sleeper and wakes during the night 6-7 times per week. He will also not settle in his room so I come down with him. More often than not-he will eventually fall asleep on the sofa but this can be hours after we come down.
I also have never needed much sleep so providing I get 4+ hours I am fine (I’ve had to be, its been happening 12 years) however, when I haven’t had enough/any I do struggle the following day and feel that everything is a chore and I have to try so hard to not get snappy with the children. My son seems to know when I am not feeling 100% and tends to misbehave and makes a hard day 100 times harder! I am usually always tired and really struggle through the day.”

Parent of 3 boys 1 with Cerebal Palsy and 1 with Aspergers & ADHD (14)

“He is nearly 14 years old, has very deprived sleep which means some days he stays awake for 23 hours a day, we work Full time both of us, my husband is up early in the morning, so I do the getting out of bed every night to try to get him off his Xbox, mobile phone, laptop, on a good day he will be in bed by 2am , then I’m up at 6 for work. His attitude is disgusting as he is so sleep deprived , so then it effects his schooling as he falls asleep in class, so gets detentions, and we get calls from his teachers which are rude and arrogant, so a vicious circle everyday for us.
Doctor’s won’t give him sleeping tablets as they are addictive, so have to do the best we can. He has ADHD and Aspergers syndrome.”

As always please share your experiences below in the comment box.

L x


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